Utilization, financial outcomes and stakeholder perspectives of a re-organized adult sickle cell program.

In 2011 Yale New Haven Hospital, in response to high utilization of acute care services and widespread patient and health care personnel dissatisfaction, set out to improve its care of adults living with sickle cell disease. Re-organization components included recruitment of additional personnel; re-locating inpatients to a single nursing unit; reducing the number of involved providers; personalized care plans for pain management; setting limits upon access to parenteral opioids; and an emphasis upon clinic visits focused upon home management of pain as well as specialty and primary care. Outcomes included dramatic reductions in inpatient days (79%), emergency department visits (63%), and hospitalizations (53%); an increase in outpatient visits (31%); and a decrease in costs (49%). Providers and nurses viewed the re-organization and outcomes positively. Most patients reported improvements in pain control and life style; many patients thought the re-organization process was unfair. Their primary complaint was a lack of shared decision-making. We attribute the contrast in these perspectives to the inherent difficulties of managing recurrent acute and chronic pain with opioids, especially within the context of the imbalance in wellness, power, and privilege between persons living with sickle cell disease, predominantly persons of color and poor socio-economic status, and health care organizations and their personnel.

Family caregiving for adults with sickle cell disease and extremely high hospital use.

This study investigated coping with chronic illness in the adult patient-caregiver relationship for sickle cell disease, marked by debilitating acute and chronic pain. One-on-one interviews (N = 16) were conducted with eight primary caregivers of eight adults with extremely high hospital use, severe sickle cell disease with hospital admissions several times monthly over successive years. Caregivers were predominantly parents; two were romantic partners. Caregivers attributed disruptions to the disease's variability, tensions in how much support to give, and adults' inability to fulfill parental obligations. Both groups expressed fears of patients' increasing age, declining health, and early death. Targeted counseling and resilience training is recommended.

Long-term Prescription of Opioids and/or Benzodiazepines and Mortality Among HIV-Infected and Uninfected Patients.

BACKGROUND: Increased long-term prescription of opioids and/or benzodiazepines necessitates evaluating risks associated with their receipt. We sought to evaluate the association between long-term opioids and/or benzodiazepines and mortality in HIV-infected patients receiving antiretroviral therapy and uninfected patients. METHODS: Prospective analysis of all-cause mortality using multivariable methods and propensity score matching among HIV-infected patients receiving antiretroviral therapy and uninfected patients. RESULTS: Of 64,602 available patients (16,989 HIV-infected and 47,613 uninfected), 27,128 (exposed and unexposed to long-term opioids and/or benzodiazepines) were 1:1 matched by propensity score. The hazard ratio for death was 1.40 [95% confidence interval (CI): 1.22 to 1.61] for long-term opioid receipt, 1.26 (95% CI: 1.08 to 1.48) for long-term benzodiazepine receipt, and 1.56 (95% CI: 1.26 to 1.92) for long-term opioid and benzodiazepine receipt. There was an interaction (P = 0.01) between long-term opioid receipt and HIV status with mortality. For long-term opioid receipt, the hazard ratio was 1.46 (95% CI: 1.15 to 1.87) among HIV-infected patients, and 1.25 (95% CI: 1.05 to 1.49) among uninfected patients. Mortality risk was increased for patients receiving both long-term opioids and benzodiazepines when opioid doses were ≥ 20 mg morphine-equivalent daily dose and for patients receiving long-term opioids alone when doses were ≥ 50 mg morphine-equivalent daily dose. CONCLUSIONS: Long-term opioid receipt was associated with an increased risk of death; especially with long-term benzodiazepine receipt, higher opioid doses, and among HIV-infected patients. Long-term benzodiazepine receipt was associated with an increased risk of death regardless of opioid receipt. Strategies to mitigate risks associated with these medications, and caution when they are coprescribed, are needed particularly in HIV-infected populations.

Sickle cell disease patients with and without extremely high hospital use: pain, opioids, and coping.

CONTEXT: Patients with sickle cell disease (SCD) and extremely high hospital use (EHHU) encounter significant challenges in pain management because of opioid medication use for pain and providers' concerns about addiction. OBJECTIVES: To characterize engagement with the health care system surrounding opioid pain management among SCD patients with EHHU by comparing their experiences with low-hospital-using (LHU) patients and their medical providers' perspectives. METHODS: One-on-one, semistructured qualitative interviews with patients and medical providers were audiotaped and transcribed. Participants were eight SCD patients with EHHU; matched by age, gender, and hemoglobinopathy type with eight SCD patients with low hospital use; and five providers identified by patients with EHHU as important to their care. A multidisciplinary team conducted chart review, created narrative summaries from the interviews, and used qualitative software to code transcripts based on themes. RESULTS: High-hospital-using patients and LHU patients had similar descriptions of their experience of pain and pain management with opioids. Patients and medical providers shared concerns about addiction. LHU patients described themselves as allies using specific interpersonal and symptom-related strategies, whereas high-hospital-using patients took a defensive and reactive stance toward their providers, who were similarly defensive about their care. CONCLUSION: The prescription of opioid medications for SCD pain management exacerbates issues of distrust in the patient-provider relationship. Such issues dominate patient care in patients with EHHU. Patients with EHHU and providers may learn from the proactive nature of LHU patients' engagement with the health care system as further research and interventions are designed for EHHU.

Prescription opioid misuse in the United States and the United Kingdom: cautionary lessons.

In the United States, opioid analgesics have increasingly been prescribed in the treatment of chronic pain, and this trend has accompanied increasing rates of misuse and overdose. Lawmakers have responded with myriad policies to curb the growing epidemic of opioid misuse, and a global alarm has been sounded among countries wishing to avoid this path. In the United Kingdom, a similar trend of increasing opioid consumption, albeit at lower levels, has been observed without an increase in reported misuse or drug-related deaths. The comparison between these two countries in opioid prescribing and opioid overdose mortality underscores important features of prescribing, culture, and health systems that may be permissive or protective in the development of a public health crisis. As access to opioid medications increases around the world, it becomes vitally important to understand the forces impacting opioid use and misuse. Trends in benzodiazepine and methadone use in the UK as well as structural elements of the National Health Service may serve to buffer opioid-related harms in the face of increasing prescriptions. In addition, the availability and price of heroin, as well as the ease of access to opioid agonist treatment in the UK may limit the growth of the illicit market for prescription opioids. The comparison between the US and the UK in opioid consumption and overdose rates should serve as a call to action for UK physicians and policymakers. Basic, proactive steps in the form of surveillance - of overdoses, marketing practices, prescribers, and patients - and education programs may help avert a public health crisis as opioid prescriptions increase.

Guideline-concordant management of opioid therapy among human immunodeficiency virus (HIV)-infected and uninfected veterans.

UNLABELLED: Whether patients receive guideline-concordant opioid therapy (OT) is largely unknown and may vary based on provider and patient characteristics. We assessed the extent to which human immunodeficiency virus (HIV)-infected and uninfected patients initiating long-term (≥ 90 days) OT received care concordant with American Pain Society/American Academy of Pain Medicine and Department of Veterans Affairs/Department of Defense guidelines by measuring receipt of 17 indicators during the first 6 months of OT. Of 20,753 patients, HIV-infected patients (n = 6,604) were more likely than uninfected patients to receive a primary care provider visit within 1 month (52.0% vs 30.9%) and 6 months (90.7% vs 73.7%) and urine drug tests within 1 month (14.8% vs 11.5%) and 6 months (19.5% vs 15.4%; all P < .001). HIV-infected patients were also more likely to receive OT concurrent with sedatives (24.6% vs 19.6%) and a current substance use disorder (21.6% vs 17.2%). Among both patient groups, only modest changes in guideline concordance were observed over time: urine drug tests and OT concurrent with current substance use disorders increased, whereas sedative coprescriptions decreased (all Ps for trend < .001). Over a 10-year period, on average, patients received no more than 40% of recommended care. OT guideline-concordant care is rare in primary care, varies by patient/provider characteristics, and has undergone few changes over time. PERSPECTIVE: The promulgation of OT clinical guidelines has not resulted in substantive changes over time in OT management, which falls well short of the standard recommended by leading medical societies. Strategies are needed to increase the provision of OT guideline-concordant care for all patients.

Science in the service of patients: lessons from the past in the moral battle for the future of medical education.

Medical schools instill a classic moral standoff in which the responsibility for the betterment of the patient stands at odds with the responsibility for the betterment of society. In critical ways, the latter, in the form of a robust research and technology-driven enterprise, has taken precedence over the former, resulting in harm to patients and individual dignity. This tradeoff can be traced to Abraham Flexner, the father of American medical education. In the wake of the Flexner report, American medicine set out on a course of exponential scientific advancement, but the mistreatment of research subjects and the erosion of the doctor-patient relationship in a health care system that is increasingly unaffordable, complex, and impersonal suggest that such progress has come at a price. Recent efforts by medical schools to emphasize humanism in their curricula and admissions processes have shown promise in orienting the values of academic medicine toward the individual patient's well-being.